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kmichaelson

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Everything posted by kmichaelson

  1. Hi everyone, I've been having a new issue lately (fun, fun). My hands have started swelling pretty dramatically, and when this happens they get really really itchy and red! Could this be a blood pooling thing? I can't figure it out. Often it happens after I've been moving around, like going for a walk. Also, it's happened twice when I've been wearing gloves (a different pair each time so I don't think it's an allergy). Sometimes just part of my hand will swell, like my palm pad, and other times both hands will swell a lot--fingers, palm, everything--so that I can't even move my fingers properly. Sorry, I know it's a bit weird and vague! I just don't know what's causing it. I take Florinef, but the first time this happened was before I started Florinef.
  2. I'm sorry you're in diagnostic limbo still! I was there for a very long time too and it's hard to find the right doctor I know. If you have a history of appointments with a certain doctor, I would just go back to that person. I think someone you've been going to and knows the situation would be the best bet. I didn't know what I had for the longest time, but I knew I was dizzy every day and unable to work like I used to, so first I had an ear, nose, throat doctor manage my documentation for work, then a neurologist, and now a cardiologist. My human resources contact told me that it should just be the doctor who is treating me for the problem that's keeping me out of work. Of course, with what we have it seems to affect so many systems--like you I have crazy stomach issues, dizziness, fatigue, and of course heart rate & bp issues--it's hard to decide which issue is the worst and the thing actually keeping us from work. Anyway, I hope you get it sorted out and can take some time off to recover. It took a long time for me to officially take that step, but it was the right thing to do and gave me time to get recuperated and now I'm working my way back to full-time slowly. Good luck to you and take care of yourself.
  3. Thanks to everyone for the good suggestions and the understanding! Ginger, I'm so sorry to hear what happened with your work! I guess I feel like that's the situation I'm coming to. You're right that people--or at least the regulations they have to follow--can be really inhumane. Also, pretty much no one has a clue what it's like to feel this way unless they've been through it. I feel like my HR rep thinks I'm a complete nut job. My meeting with HR has been postponed, but I spoke with my boss and he was reassuring, so I don't think he is trying to get rid of me. I think it's just a matter of making HR understand the situation and maybe I can give them a plan for my return like someone suggested. It's just hard to plan anything at this point when I don't know how I'll feel the next hour! I was really upset and stressed when this first happened, but now I feel like I can only control so much. I'll present the situation to them and any documentation I have, and if the worst happens and I have to resign/be fired, then at least I won't have to exhaust myself every day trying to get in to work when I feel like crap! I'm just telling myself everything happens for a reason. Thanks again to everyone for listening!
  4. This is me right now too. I work because I'm able to barely hang onto my job and don't want to lose it if at all possible, but it pretty much exhausts me and prevents me from doing ANYTHING else. I can go for a short, moderate walk most evenings, but sometimes I just can't manage it. I feel like working is good for me emotionally and mentally, but it's killing me physically. If I didn't have to work, I think I could reserve my energy for other things and in some ways have a better quality of life. Like others have said, I can do errands for the most part, but it's a big effort because I get so dizzy in busy environments.
  5. Hi Babis, I'm sorry you haven't had better results. I know how discouraging it is waiting for new treatments, tests, appointments and getting my hopes up that this time something will work. Thanks for sharing so much about what you've learned through this.
  6. I think that my POTS was caused by having mono (recurrent EBV and CMV), and when I had my first bout of mono I lost A LOT of hair at that time. It just came out in clumps after I showered. Do you know if you could have some kind of virus going on as well? Of course, it may be that the virus caused nutritional or thyroid issues that were the real cause of my hair loss, so the virus might not have been the root cause. It's difficult to pinpoint why things are happening when there are so many things going on with our bodies.
  7. Thanks to both of you for your responses! I appreciate the solid advice. I guess I'm at the point of trying to convince HR that I want to come back as long as I'm able, but it's just hard to predict how I'm going to feel day to day, and I know they want to see a solid schedule. I actually don't have any longterm disability. I wonder if it's too late to get it now that I'm already diagnosed? I'll have to ask HR about that as well. I just feel like whenever I talk to the HR rep, she thinks that I'm faking my illness or that I'm a hypochondriac and just trying to get out of work, so I'm very self-conscious (not quite the right word) talking to her.
  8. Hello all, I just joined this forum last week, and it's been amazing to read all of the posts from people who are going through stuff so similar to what I've been experiencing. I'm sorry this is a long post, but this is my first time starting a topic, and it's been a long journey to this point! After more than two years of extreme dizziness, fatigue, digestive problems, and a myriad of odd little symptoms, I was finally diagnosed with POTS officially a couple of weeks ago. (On my tilt table test my blood pressure went down to 42/25 and I passed out.) Even though POTS is hardly something to be happy about, I was relieved to have a name for everything I'd been suffering, and I was excited that I could possibly know how to treat my symptoms. (I'd been seeing a neurologist before this who had me on a diuretic to prevent what she thought were vestibular migraines. Of course the diuretic was making things even worse I figured out eventually!) I'm not feeling any better yet, but I've been on florinef for a week and a half now, so I have hope it will help soon. Unfortunately because I've been sick and it's taken me so long to figure out what my problem is, I've used up my FMLA for the year already. I was just unable to get around every day. It was so difficult to even get myself out of bed, and when I did, I was so dizzy, weak, tired, and had stomach problems. It was all I could do to get through the day, let alone put in 8 hours. Anyway, I eventually went back to work and my direct supervisor has been good to let me come back gradually. I've recently been working 5 hours a day and was hopeful that I could keep gradually upping my hours until I got back to full time. Sadly, the human resources department at my work doesn't seem to like this. They've called a meeting to go over my hours, and have sent me a copy of the college's policy on FMLA and told me to prepare any calendars and documentation I have. I've turned in all the paperwork and documentation that they've ever requested, so I'm skeptical that we're all just going to sit down and review it. I'm very afraid I'm going to be fired. Of course, this is NOT helping my health right now. I feel dizzier, weaker, and more nauseous/crampy than ever right now, plus my heart feels like it's going to explode! I'm so depressed that after trying to get better for so long and starting to get back to work, that I'm going to lose my job now. Maybe I'm overreacting. I've asked my direct supervisor if he can tell me what the meeting is going to be about, but I haven't heard back from him yet. Sorry again for the super-long post. I'm just feeling so sad right now and needed to share with people who might understand.
  9. Wow, Babis, thank you so much for that information! I'm new to this forum (and the diagnosis) and don't know much about it, but I have very high Ebstein Barr and CMV antibody levels & recurrent mono, so this sounds so much like me! Again, thank you so much for this information! I have tears in my eyes at the prospect of finally getting some answers about what's been going on with me for the past two years and being able to target my treatment a bit better!!!
  10. Add another to the low temperature list! Mine is usually 96-97 degrees. When I had mono it was as high as 104, but usually when I'm sick the highest it gets is about 100. I wonder if having low body temperature is related then to autonomic dysfunction somehow? It seems like something the autonomic nervous system would control!
  11. Wow, you just described me with the stomach problems, jello body, and alternating nervous/exhausted feelings! I'm very new to all of this and I don't know anything about my cortisol levels, but it feels almost like my body is overreacting to the slightest stress (like simply waking up!) and then it exhausts me in the long run. It's amazing the number of symptoms so many of us share. I can't even describe this illness to my family and friends... when they ask what it is, I want to say "how long do you have to listen?" because it seems like it affects every system in my body sometimes.
  12. Hi CC, I'm also a new POTsy so what you're saying really hits home with me! I'm also struggling to keep my job. I was on medical leave for as long as I could, and now I'm back and my boss has been good enough to allow me to return part-time at first and gradually up my hours. Do you think such a thing would be possible for you at your job? I tried going back full-time a few times, and I ended up in what I guess was a relapse due to the sudden change of going from inactivity back to 100% right away. Also, like someone else said, would it be possible to stay with the company but do work that's less stressful on your body? I can't imagine being on my feet all day with this. I don't know if you have a union where you work or anyone who is helpful in your human resources department, but maybe they can help you figure out what can be done in your situation. Like you, I hate asking others for help or having exceptions made for me, but I've realized the hard way that if I try to do everything I used to do and do it all on my own, I'm just going to end up sicker than I was in the first place. Good luck with your treatment & hugs to you! Better days are ahead!
  13. Hello all, This is my first post because I've just been diagnosed myself after two very long years of feeling dizzy, numb, horrible, and not knowing what's going on!!! While I feel bad for everyone else having these symptoms, I've had just exactly what people are describing! My feet and hands go numb or fall asleep much more easily than they used to. Also, my hands & feet are usually either ice cold or burning up. The most troubling thing I've had is difficulty with finger dexterity, especially when my hands are cold. I can sometimes barely move my fingers to do simple things that never used to be a problem! Among what seemed like a million tests, I actually had an EMG/NCV test over the summer for just these symptoms. With the EMG test, they applied a light shock to various spots on my arm and leg (where I was having symptoms) and then measured my nerve response. For the NCV, they actually put needles into different spots on my body with an electric current and measured nerve response time there. It's definitely not a pleasant test, but I think I'd rather do that again than my tilt table. My results were a bit frustrating because they seemed to show something going on, but the doctors didn't know what... this was before I knew I had dysautonomia, so perhaps if I'd known that (or my doctor had) at the time, it would have been more informative. I guess some of my nerves were "slow" in responding, but they didn't find any evidence of a degenerative condition. (sigh) whatever that means! All I know is I still have trouble moving my fingers whatever the test says or doesn't say. One thing that was really interesting to me is that the lady who did the test had me soak my hands and feet in hot water before the test because having cold hands/feet can slow down the nerve signals. Well, given that my hands and feet are ice cold 2/3 of the time, it seems to me that that could be part of my issue. Good luck to you in finding some answers on your test, Kate! (My name is also Kate, btw, and I notice Katybug started this thread!)
  14. hoping to "validate" soon so I can participate in forums!

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